With my special ed kid in high school, I started attending evening lectures and seminars about what to do when he turns 18. We’re not quite sure what supports that Ian will need as he gets older, so I am preparing for the worst case situation and the best case situation.
The worst case scenario is that he can never manage the real world on his own and will need full support for everything from work to food to housing. The best case scenario is that he can use his computer skills to find a proper job where they won’t mind his oddities, and he can live independently enough that he will only need light oversight from a family member.
Last week, I went to one talk where a social worker for the county gave us an overview of all the tasks that a special ed parent must do before the child turns 18, and then how they would have to manage the health, food, housing, transportation, employment, and social needs for their child. I knew some of those things already, but this was the first time that I got the broad overview.
It was horrific.
Until your child is 21, the school district is largely in charge of people with special needs. Not only do they have to provide the child with an education, but they also provide counseling, physical therapy, social groups, and transportation. They don’t necessarily provide health care, but in the special ed school that I taught at it in the Bronx many years ago, they wheeled in kids in wheelchairs who were semi-comatose and supervised them for the day. By law, they must care for all children until they turn 21.
Special ed parents talk about what happens when their child turns 21 as “falling off the cliff.” Services stop.
The woman from the county explained that parents had to manage all those aspects of their child’s life on their own. Yes, there were different bureaucracies with different pots of money that could help you, but the money was small and each bureaucracy had its own paperwork and quirks. It became very clear at this presentation that some parents, specifically the mothers, now had a full time job managing their child’s life.
It is a full time job just filling out the paperwork. And the quality of services is terrible. Yes, they’ll give your kid a lift to his job at the supermarket pushing shopping carts for less than minimum wage, but it takes 45 minutes for the van to arrive. At some point, the state will provide your child with housing, but there is a ten year waiting list for an apartment.
The woman explained that parents had to spend $5,000 on a lawyer to create a special needs trust and to get guardianship over the child-adult, which is necessary to pay their bills and to make medical decisions. She briefly mentioned that the difference between getting power of attorney versus the guardianship option, but told us to consult with a lawyer about these matters.
At one point during the talk, my face got all red as I realized the scope of work ahead of me, if we face the worst case scenario. I think I burst out with “THIS IS INSANE!” in the middle of her presentation.
How can anybody with a family with special needs ever vote for a Republican? I can’t understand how anybody would vote against their family’s needs in this way. We have no safety net in this country.
If some cells divide incorrectly in utero, you have spend the rest of your life out of the workforce, and instead your days become about managing paperwork just to get your child-adult out of the basement. A couple of wonky cell divisions means a substantially poorer family income and a lifetime of working your way through phone trees to find the right dispirited bureaucrat who will okay your transportation voucher.
If I knew all this twenty years ago, I might not have decided to be a parent. I probably would have anyway, because my kids bring me so much joy, but if I knew all this, I would have certainly paused and reflected on the risks.